Daily Mail: 23-year-old takes her first steps in NINE years after being confined to bed with ME

[MeSci]

Patients themselves are making a concerted effort to raise funds for Invest in ME'S biomedical research. We have nearly reached the first target for the Rituximab trial.

Until there is effective treatment, severe myalgic encephalomyelitis sufferers such as Jessica will continue to waste years of their lives ( sometimes their entire lives) lying in darkened rooms whilst the fatigue clinics 'treat' and the psychiatric profession 'research' only those with mild defined fatigue.

Yes - I didn't want to imply there was no positive action in the UK patient community.

 

[Firestormm]

She's wearing a harness, holding onto a walker, and two people have their hands on her back and shoulders to keep her from toppling over. In the larger image she looks both ecstatic and about to collapse from exhaustion.

Winching someone out of bed and propping them up for a few seconds seems like a rather poor indication of progress. Of course, I certainly hope that physical improvement is possible, but I see no reliable indication of it in the current situation.

You should visit her Facebook page. Yes she is still very ill. But she can walk. There's a video on her page - a few posts down - where she walks through the house showing you her new bedroom and the rest of her home. They've added a kitchen area for her and toilet nearby. But as she says in a post above, she still has a ceiling hoist etc. Still. The important thing is SHE feels she has made progress.

 

[MeSci]

You should visit her Facebook page. Yes she is still very ill. But she can walk. There's a video on her page - a few posts down - where she walks through the house showing you her new bedroom and the rest of her home. They've added a kitchen area for her and toilet nearby. But as she says in a post above, she still has a ceiling hoist etc. Still. The important thing is SHE feels she has made progress.

Is it? IMO too many surveys/measures rely on people saying whether or not they feel better, worse, etc. Surely the most important thing is whether she has any functional improvements and any improvements in physiological parameters.

I'm glad she feels better, of course, but as a patient group we need much more than that.

 

[Firestormm]

Is it? IMO too many surveys/measures rely on people saying whether or not they feel better, worse, etc. Surely the most important thing is whether she has any functional improvements and any improvements in physiological parameters.

I'm glad she feels better, of course, but as a patient group we need much more than that.

Oh I'd say walking about the house after NINE YEARS in bed was a 'functional improvement' wouldn't you?!

 

[Firestormm]

Here. Read her Facebook Page: The World of One Room

I honestly do not know why some in this community have to be like they are being. This young lady was able a few months ago to sit up unaided for the first time and fix her hair. To brush her teeth (with help at the time - see photo), and now stand and walk (carefully).

Is it that people fear seeing this progress in that in might somehow undermine how serious ME is? Nine years she was in bed and being tube-fed.

I mean it's all there on her page.

I see only one other ME charity has covered this story aside from the ME Association.

Why hasn't 25% Group? Or IiME? Not even a mention. Are they that entrenched that they wont post something because it contains a contribution from a 'competitor' or is it more to do with not doing stories that show someone who has ME making progress?

How sad.

 

[MeSci]

Here. Read her Facebook Page: The World of One Room

I honestly do not know why some in this community have to be like they are being. This young lady was able a few months ago to sit up unaided for the first time and fix her hair. To brush her teeth (with help at the time - see photo), and now stand and walk (carefully).

Is it that people fear seeing this progress in that in might somehow undermine how serious ME is? Nine years she was in bed and being tube-fed.

I mean it's all there on her page.

I see only one other ME charity has covered this story aside from the ME Association.

Why hasn't 25% Group? Or IiME? Not even a mention. Are they that entrenched that they wont post something because it contains a contribution from a 'competitor' or is it more to do with not doing stories that show someone who has ME making progress?

How sad.

I don't think anyone is being negative. We just need more evidence of what is going on and what has brought about any changes, so that we can act on it/use it to focus research, etc.

 

[Valentijn]

I honestly do not know why some in this community have to be like they are being. This young lady was able a few months ago to sit up unaided for the first time and fix her hair. To brush her teeth (with help at the time - see photo), and now stand and walk (carefully).

No, she has a hoist which basically takes her around the three room apartment. I think that's an amazing improvement in assistance being provided to her, but it's a far cry from walking around under her own power. And as of two days ago she wasn't doing so hot:

. . . but today we were back to square one as they were finishing the building. I could only groan and shake uncontrollably as the drilling tortured me. I'm now left in a heap, shaking as the M.E monster tortures me further.

She can sit up and brush her teeth now, while looking like a struggling zombie for the camera. It sounds like she's pushing her limits to reach arbitrary signs of "improvement" and then getting knocked back. Maybe there has been progress, but nothing near what there should be after 5 months if deconditioning was a significant issue or if GET could deliver even a tiny fraction of what it promises.

 

[Valentijn]

Thank you for posting the link to her facebook page, @Firestormm . It's extremely disturbing. Aside from the positive aspect that she's getting appropriate support, the rest shows pretty creepy CBT influences.

A huge focus on "fighting" the disease, and in a couple posts from the last month or two she confesses that she doesn't talk about any worsening or negative symptoms usually to keep a positive appearance. Her pain is mentioned, in the context of getting worse (unbearable) due to them cutting her back on drugs and the increased activity. Her doctor seems to think that the increased pain is part of progress and she has also adopted that attitude.

This situation looks like 1) a tiny bit of additional functionality due to proper support and 2) moderate to severe brainwashing. The first part is great, and every moderate and severe ME patient should be getting as much support as possible, though much of her help seems to be privately funded - she can't even get a reclining wheelchair from the NHS. But the brainwashing is what really scares the crap out of me, since that can lead to relapses and she doesn't have much "down" left to go to as she already has such minimal functioning. It can also cause a lot of self-blame, and I hope her family and friends are sufficient to see her through that.

And even though much of the improvement in her life is due to the additional support, it's already looking like people want to credit the magical healing of CBT and GET.

 

[Firestormm]

☆Jessica L E Taylor☆ ‏@JayLETay 5h
@MEAssociation I'm so pleased to be able to share my news. It's important to realise IM STILL SEVERELY ILL&bedridden. We fought for funding

 

[justy]

http://www.burrswood.org.uk/sites/default/files/chronic_fatigue_syndrome.pdf

 

[MeSci]

http://www.burrswood.org.uk/sites/default/files/chronic_fatigue_syndrome.pdf

Listed under medicinal treatments is 'Bungee jumping'.



The document starts out well, listing a lot of rational treatments, then he goes on to his own preferred treatments...

Some of that is OK, but there is a bit of 'sleep hygiene'.

Then...

For many patients I try to engage them in a routine of daily exercise. My preferred option is a form of aerobic exercise, based on the work of Peter White and Kathy Fulcher at Barts

and

For some patients this graded aerobic exercise approach works well and is a key part of their progress. For others, they are never able to progress the programme for a variety of reasons – invasive symptoms, relapses and just inability to overcome the fears of worsening the situation.

(my bolding)

Is he now going to blame this poor girl for just being afraid rather than ill?

 

[Valentijn]

http://www.burrswood.org.uk/sites/default/files/chronic_fatigue_syndrome.pdf

 

[alex3619]

Patients with severe ME sometimes make improvements. Its always nice to read that someone is improving. Attributing this to whatever is something else, and the science needs to be there. I am aware of quite a few cases of people going from severely bed bound to walking around a bit. I am unaware that anyone has ever proven that any therapy can do this.

 

[cmt12]

http://www.burrswood.org.uk/sites/default/files/chronic_fatigue_syndrome.pdf

This is pretty impressive for an extrospective, or outsider perspective. Further understanding requires deep and committed introspection.

 

[alex3619]

http://www.burrswood.org.uk/sites/default/files/chronic_fatigue_syndrome.pdf

While at first glance this is heavily influenced by CBT/GET, looking more closely its hard to see where this is not that much different from pacing, though driven too much by goals and targets. The prescription is a very low grade of exercise without exacerbating symptoms. There has been a tendency to downgrade GET until it looks much more like pacing, and I think this is an example of that. However this emphasis on aerobic exercise, rather than light anaerobic exercise, needs to be challenged. Our aerobic system is broken. It has not been shown that exercise is able to recondition this. The PACE research completely ignores so very much of the science, and cannot even show a coherent rational analysis of what they did find.

 

[Valentijn]

While at first glance this is heavily influenced by CBT/GET, looking more closely its hard to see where this is not that much different from pacing, though driven too much by goals and targets.

The whole thing as an entirety is somewhat nuts. It's as if the doctor writing it has uncritically accepted pretty much every result coming out of ME/CFS research. Thus the "perpetuating factors" are all behavioral and psychological and testing is harmful, but all of the physical dysfunctions are completely accepted too, and even acknowledged as not being due to deconditioning or psychological factors - yet treated by psychological therapies

So he's probably not a hard-core BPS member, but perhaps too respecting of authority. I had noticed that the patient's reports were indicative that GET wasn't being pushed by the practitioners, at least not with any real force, so that's a decent sign.

 

[MeSci]

Here's the Burrswood webpage for their 'hospital'.

And they paid for this?

Oh - the NHS taxpayers did.

 

[wdb]

Here's the Burrswood webpage for their 'hospital'.

And they paid for this?

Oh - the NHS taxpayers did.

Do we know how it was funded, it is a private hospital ? Looking at the prices a 16 week stay must be in the ballpark of £40k

 

[Firestormm]

Do we know how it was funded, it is a private hospital ? Looking at the prices a 16 week stay must be in the ballpark of £40k

As I have said - and Jess has also said as well (see above somewhere) - the NHS funded her stay and they had to fight for the funding. As for exact cost I would not know.

 

[alex3619]

There is an old salesman's trick. You say some obviously right things, and make sure the mark, umm, the customer agrees. Then you say some slightly less obvious things, and get agreement. By the time you get to the punchline, or at least that is the theory, the sucker, ummm, customer, is ready to agree to anything. The sale is made - unless you suck at selling, or the mark, ummm, customer sees through it.

This is used in psychogenic and related literature. It is persuasive rhetoric devoid of evidence and reason ... except in enough bits to give it a gloss of verisimilitude. It appeals to prejudice, that is pre-judgement, and ignorance, or lack of knowledge. Without sufficient knowledge and with pre-formed opinion in the absence of good facts, even doctors are vulnerable.

I have also been reflecting on claims made by some doctors that they practice evidence based medicine. For some I think this is accurate. For others, and probably most who make the claim, I think they do not understand what evidence based medicine is, its being used as a rubber stamp to authoritative claims. I also think that some published Cochrane reviews have not come to grips with what evidence based medicine is.

The medical profession is between a rock and a hard place. On the one hand they must save money and not do tests and push patients through fast without proper investigation, and are never given time or resources to properly update their knowledge. On the other hand they are expected to get results, to cure or successfully treat patients, and even know what they are talking about. These two extremes are sometimes incompatible.

I have a suspicion that a proper economic analysis needs to be done to see if ignorance, buck passing and failure to perform adequate testing, and hence leading to misdiagnosis, costs much more money in the long run than anything saved. I suspect its the far more expensive option. I suspect that this is a case of musical chairs, and they keep shuffling patients around, at ever greater cost, until the music stops. Then they pass them onto the next circle of chairs, often a psychiatric circle.

If the medical profession and bean counters came to grips with reality and were honest then I think things would work a lot better. This is just a suspicion, but its way overdue for bureaucrats and medical decision makers in government to get a good dose of reality.

In an ideal world we would already have obvious tests to assess ME patients, and good treatments. Alas, this world is not ideal.